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March 20, 2007

Data Dilemma

400pxautismnocgraph I have a deep-seated distrust of distaste for studies.  If you've been reading DadCentric long enough you probably know that already.  What?  You don't remember that post from August 2006?  Sheeesh.  I guess I shouldn't assume that, just because we slave away, investing our time and sweat on every post, you would remember every word to every one I submit.

I especially have a strong aversion to studies that leave a lot of wiggle room; that provide hope or dash it; or take advantage of a crisis or exploit the timing to publicize their findings.  I bring this up regarding a recent (September 2006) study done in Israel regarding paternal age and a correlation being drawn that older dads are more likely to father children with autism.  (Disclaimer: I am not a scientist, nor do I do research, this is purely from a layman's perspective and to be taken with a grain of salt or less.)  Now, to be fair, this study got a lot of play in September when it was released and was also tied in with a "men have biological clocks" meme.  The only reason I'm bringing it up now is because Jason received an e-mail from an individual providing his paper as a source of material from which to draw.  Again, to be fair, advanced paternal age has been a risk factor in other neurodevelopmental disorders, so it isn't a giant leap of faith to make these assumptions -- maternal age has been shown to increase the risk of Down's syndrome and has been associated with dyslexia, among other afflictions, so why shouldn't paternal age have some sort of impact?  Then again, does it?

My problem is with the weight placed on the findings in this study and the media hyping of those numbers and the media hyping of every bit of information that comes down the pike especially with regard to autism.  I interact with a significant autistic population and have relationships with several of the parents.  Again, I'm no scientist and my opinion is based solely on anecdotal information, but many of these parents were in their 20s and 30s when they had their children.  I have a relative who has two autistic children and he was in his late-20s/early-30s when they were born.  I'm not an expert in this realm by any stretch -- I only know what I see, what I read and what I learn from others far more knowledgeable than I.  Right now, autism is getting a lot of attention -- as it should (and should get more) -- and families are looking at every study, every piece of data...everything and anything to help them understand the root causes and provide them with some hope for a cure.  Had this study concluded that paternal age was a significant contributing factor in, say, migraine headaches, would those results have warranted such coverage?  I don't think so.  But, if your study is about autism in any way?  Boom, above the fold, 72pt., bold with drop shadow, regardless of the effect it might have on those families.

My point (if I ever even had one when I started this post) is that we need to be careful with the release of this sort of information.  Very little of it is ever conclusive and regardless of how pure the motivations are, no study is ever as "clean" as one would hope.  Hyping data is a disservice to those struggling to understand what is happening to their children.  Case in point: just this past weekend was a study released that indicated that autism may not be inherited after all.  Oops.  Kind of throws a wrench in the paternal age a bit, doesn't it?  What is conclusive is that we are looking at a very complex disease and researchers are only now beginning to understand just how complex it and how difficult to conquer it really will be.



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